Wednesday, August 28, 2013

The other day a facbook group about dialysis patients, kidney disease and transplants had a bunch of people sharing their scars. One thing about us ESRD patients is that we are often covered with scars. I have quite the number myself. My stomach and lower abdomen looks like a roadmap to Albuquerque. You know, scars aren't always pleasent, but for many of us - they're symbols of what we've survived. They're reminders of what we endured.

Some guy, who belonged to the same group, commented on how he didn't want to see those - they were "putting him off his lunch".

We spend so much time covering up things like our scars or our fistulas, for the comfort of others because they "can't handle it." Well, I'm really very sorry that you're such a delicate and weak person that you can't successfully handle the marks of another's struggle - someone who may have been through something worse than you. Something that you think would be so horrible, but something you might be surprised to find out average and normal people survive all the time.

The strength of character and spirit is often tested with such illnesses as ESRD. People do not like to be confronted with them - to be reminded of their own mortality - so a lot of us chronically ill people spend our time covering up. Not for our own peace of mind, but to provide it for others around us. Not just kidney patients - but people of all kinds. I think it's kind of silly - people are all so apt to wear bracelets or ribbons for diseases, but God Forbid human beings go out in public as who they are.

My scars aren't pretty at all - and my fistuala is huge and garish to look at. But I survived the incidents that let to them. I'm still alive, I'm still kicking, and I'm still a human being. My scars are my stories. My scars are a roadmap of my life. They show the bumps in the road. They remind me of what I can endure. They remind me that I became stronger than I ever thought I could be - and in the long road of life ahead of me, I know I'll have more. And I need that reminder of my own strentgth in those times when I look to what I know I'll have to endure in the future.

So, I'm sorry if our scars put you off your lunch, but you could probably stand not to eat for a moment anyway, sir.

Friday, August 16, 2013

Last
night, I pulled an old book off my shelf - it was my hardcover copy of
Stephen King's "The Dead Zone". I wanted some nice, easy reading and I
didn't feel like using my Kindle app. The book itself is over 30 years
old, and the paper has slightly yellowed... the dust jacket is a bit
frayed and the plastic is coming apart a bit. The pages themselves are
rough - kind of pulpy. I can feel the wood in them. And the smell from
the pages... wow. That old smell. The smell of my old library -
filled to the brim with tomes uncounted and adventures to be had.
Immediately, I was young again... alone, and huddled in the corner of
the library somewhere. Sitting on that uncomfortable chair covered with
rough orange fabric that smells as musty and mysterious as the library.
I'm wrapped in love. I'm wrapped in that feeling you have when you're
young - where the world is big, open, wide and full of possibilities,
and that book you have in your hand is the gateway to those worlds.
Those worlds you have yet to know. I ran my fingers over the pages, and
saw the beautiful black print, and I smelled my past, my hope, my
eagerness.... the ghosts of a lifetime filled my eyes and olfactory
senses and there I sat, 20 years later, filled with memories of a life.

It's just a stupid old book, right? As a kid, the story was so
compelling, but now I smile a little more at the things I now understand
but did not as a youth. But I love it anyway - this little piece of
pop-culture. I left a piece of myself back there, decades ago, in all
those little nooks and crannies of my hometown and school libraries. I
loved finding that old kid there, in the pages of this book. This is
why, despite my love for my kindle and the convenience of having books
on demand at my finger tips, I will never, ever abandon my old
reliables. My old paper loves - my flesh, my blood left there on the
pages of the books that defined my past. I will always and forever own
my books, just as they own me.

~Steve

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Wednesday, August 14, 2013

I'm super, super bummed and depressed about how I look. Yeah. I gained almost 100lbs post transplant. And I look, and feel super, super fat.

You know, it's a hard pit to be down it, because it's both physical and mental. And you know, to change your physical, it requires so much mental power.

I feel like I'm out of mental power right now... I spent so much of my mind on keeping myself alive for years, letting go of THAT a bit I think allowed me to get so big. The comfort in food, the re-enjoyment....

And I'm having a hard time motivating myself to really push myself to lose it. And that makes me super sad and depressed.

I don't like going out in public, because I don't like the way I look. I don't like to talk to other people, because I feel like I'm this revolting blob. My clothes don't fit well, and I hate how I look in normal clothes.

So, yeah, this is me whining and venting. When I solve this one, I'm sure I'll tell you and be a bit more upbeat.

Monday, August 5, 2013

This one, well, it's not just about me - it's also about some friends of mine. You know, the kind of friends that became your family because you knew them so well. Just shy of three years ago, their son died in a tragic accident - and, well, it sent a firestorm of grief and pain through my entire network of family and friends.

Life, sadly, is full of tragedies and the older I get, the more seem to occur and will occur - but they never get any easier. I've lost many people in my life, so far - from young to old. I really miss them so much, and seeing how people live on without them can really be hard sometimes.

I mean, how do you go on when you lose someone so important to your life? What, really, do we have in this life other than each other? Sometimes I think the loss of someone else is worse than losing your own spin on the mortal coil. To live, bereft. Christ, the thought just stops the heart beating in my chest.

But I see people do it - we go on. We endure... we hold the memory dear, but we push forward.

Dammit, it's so hard, though. I just want to hug everyone so hard sometimes and tell them it's going to be all right - and mean it. I have that stupid wish, that want, that need inside to make it all right for everyone. And even if I can't, which I know I can not, I want to give that hug of love - to let them know they we're still here, and I still love them more than words can say.

I think a lot about my friends and family, and people they've lost, and I can't help but be absolutely heartbroken by it. But then I also think to myself that it was my honor and privilege, in my short time on this Earth, that I knew - and loved - people such as that. And I can count that on my death bed, someday, not the pieces of paper I accrued.

You know, it's us who often seem the most bitter, the most angry and the most cynical who want to hug everyone the most. It's because we believe in people; we believe in them being the best they can be. The world, and people at large, however, are going to wear you down sometimes. So, yeah, I can rant about a lot of things - seem empassioned, bitter... even angry. But you know, if I love you - I love you with every luminous fiber a living being can muster.

I think about the little boy we all lost, and the son that they lost - and my heart just turns right to a broken stone. But, again, it warms back up when I know I still have them, and the memory of that amazing kid.